I have heard the words hundreds of times, but they never get
easier to take. When a good caregiver
tells me that they have been accepted to nursing school or are otherwise moving
on, my congratulations are always genuine, but they are coupled with a flutter
of fear in my heart.Will I find someone
else just as good?Being born with
cerebral palsy means that I am a full-time wheelchair user, and there are many
things in my day-to-day routine that I cannot accomplish on my own.

I started hiring caregivers when I was seventeen, right
after I had moved several hundred miles away from home to attend college. It was a daunting prospect back then, and in
many ways it still is. I had to start by
asking myself some tough questions.

What did I need a caregiver to do for me? That was not as easy to figure out as it
might sound. When I was living at home
and struggled to put on my socks, I could always call on my parents or siblings
for help. Because they had always lived
with me, I never had to explain to them how to help me transfer in and out of a
car either. When I was out on my own, I
had to break down everything I did in my daily routine and figure out what I
truly needed help with. Once that was
clear in my head, I had to be able to explain the process of how to help me
effectively to other people.

As the years have gone by, the questions have become a
little more challenging. Does hiring
caregivers diminish my independence? I
grappled with that one for a long time.
For years I believed that my being independent meant that I had to do
everything I was physically capable of on my own no matter what. For me, that was physically and emotionally
exhausting. Just because I could wash a
sink full of dishes, was that the best use of my time? Especially when the task took me an hour and
a caregiver could do the same thing in ten minutes? People in my support system helped me to
understand that my independence had more to do with being able to do what I
wanted when I wanted then my doing everything by myself. As long as my dishes got done, I would rather
pass that task to a caregiver and be able to spend the extra time reading a
book or watching a movie.

The most challenging question came up a couple of years
ago. Was I ready to hire male
caregivers? Wow, that was tough. I debated the pros and cons for weeks. Guys are typically stronger than girls so
they would have an easier time doing things like lifting my wheelchair in and
out of a car or helping me with various stretches I do in order to reduce the
spasms in my body. On the other hand, I
need caregivers to help me with intimate things like getting in and out of the
shower. Could I be that vulnerable with
a guy? Would the dynamic be
different? The answers are different for
everyone. I ultimately came to the
conclusion that as long as there was mutual respect and firm boundaries in
place, I was okay working with guys.
There are many questions that come up like that. Can older people be my caregivers? For me it depends on how safe we both feel
with the possibility of my needing lifting assistance. Do I hire college students? As long as their primary desire in working
for me is making my life easier, and not making their resume look better for a
future in a helping profession. Do I
hire moms with young kids? As long as
they have a backup plan for when their child is ill and therefore cannot go to
daycare. I have been stuck too often
with the impossible choice of a caregiver calling me fifteen minutes before
their scheduled shift and saying, "I have a sick kid. I can either bring them with me to work or I
can't come in." That doesn't make
me happy.

Where do I look for caregivers? When I am short-staffed, I tell lots of friends
that I am looking. I advertise on
Craigslist. Since I live in a college
town, I contact professors that advise student groups on campus like the pre
nursing club and pre physical therapy. I
call former caregivers and ask if they know of anyone who is looking for a
job. I call other churches in my
community and ask them if they would advertise the position. My church is a really safe place for me, so I
have decided not to ask church members to be caregivers in order to avoid any
possibility of potential conflict.

Once I have people interested in the position, I am most
comfortable communicating by email. I
have created a document that gives much more detail about the position, as well
as asks them questions about their schedule and how many hours a week they are
looking for. As long as we communicate
by email, I can keep track of what questions I have answered and what they have
asked of me. I also feel more comfortable
giving my email address to people I haven't met, rather than my phone number.

Once we have exchanged several emails and I feel like it
might be a good fit, I ask to schedule an interview. I learned a long time ago to offer several
times that I am available, and ask them to pick which of those times works for
them. When I have done that, several
people have told me that I had to work around their schedule for an
interview. That is a big red flag for
me. If they cannot accommodate my needs
for an interview, they probably won't be a good caregiver. The biggest lesson I have learned about conducting an
interview is that action-based questions give me a whole lot more relevant
information than anything else.Asking,
"Why do you want this job?" got me really vague answers.When I started asking questions such as, "Can you tell me about the most difficult
situation you dealt with in your last job,” the answers I got were much more
specific and told me volumes about whether a candidate would be respectful of
me and the things that I needed.

When I decide to hire a caregiver, I have them shadow my
current caregiver for a day shift and an evening shift. That helps me out in several ways. First, a caregiver can give a somewhat
different perspective about this job than I can. Secondly, shadowing means that I am not
asking a caregiver to start working without having some idea of what to
do. If people do not want to shadow, a
training video can always be made, and a potential caregiver can watch it and
ask questions about various tasks during the interview. It is also really important to do a
background check, to make sure that the person that you hire is who they
present themselves to be.

After caregivers start, I have scheduling meetings with all
of them once a week. That way, if there
are issues to talk about, we discuss them as a team after we work on the
schedule. I have found that scheduling
meetings can be lots of fun as well.
When I make it potluck or a game night, everybody relaxes more and true
bonding happens for us all.

One of the things that works well for me is to have a packet
of caregiver policies that I give everyone when they start working. Having clear guidelines about how much notice
I need when caregivers ask for time off or to switch a shift minimizes
confusion and drama for the whole team.
Having policies helped me in an unexpected way as well.

I have struggled for many years with the "power"
issue of needing help. Even though I
cannot drive myself from place to place and am pretty dependent on the people
who work for me for basic needs, it is still necessary for me to call the
shots. That is a tough balance
sometimes. Having concrete expectations
for caregivers shows them that I will be respectful, and I expect the same
thing in return.

When I have a good team of caregivers, the quality of my
life increases exponentially! In my
twenty-eight years of experience, the lessons I have learned have helped me to
hone the process and find great people to give me care. Hopefully they can help others as well.

If you would like to share how you go about hiring caregivers, please post on our facebook page. We would love to here from you!

Lorraine Cannistra enjoys writing her blog, www.healthonwheels.wordpress.com, and she has had
five stories published
so far in Chicken Soup for the Soul books. She and Leah, her black Lab service
dog live in Lawrence, KS.